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diane64

Fibromialgia ?

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Hi all,

I was diagnosed with celiac this summer. I have been encouraging my siblings to get tested (my parents tested negative), but they have not done so as of yet. MY sister was just diagnosed with fibromialgia. She has some other celiac symptoms- anxiety, fatigue. Is fibro. related to celiac?

Thanks,

Diane

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Diane,

Hi, I have talked to many people who were dx with fibro first and later Celiac Disease. I was dx with fibromyalgia in 1995. In 2005 I was dx with Celiac Disease. All the severe symptoms of Fibromyalgia are gone. I do have a few tender spots but not nearly as tender. I do believe fibromyalgia is related to the gut. I also had a neighbor who was dx with fibro and went gluten free without a Celiac dx and he also has experienced the same great results.

Why a doctor would not test for Celiac Disease when it is in the family and instead settle for a Fibromyalgia dx is beyond me???? I would highly recommend your sister get tested before she does a trial of gluten-free. If I had discovered my Celiac 10 years earlier I would have avoided 10 years of pain and fatigue not to mention the neurological complications that developed because of a late diagnosis. Being on the diet is really quite simple...you just eat the way we are supposed to eat...all natural.

I really wish someone would have known about Celiac Disease in 1995! Good luck and I hope your sister listens to her very smart sibling.


C.D.

Mom-Gold Star Celiac dx June 2005 with many neurological complications DQ2/DQ1, 0603, dx with DH Oct 2005

Dad-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2/DQ1, 0609

Son-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2

Daughter1-Celiac Disease positive tTG IgA DQ2

Daughter2-Celiac Disease-Mild Gluten Challenge caused severe anemia and major drop in Ferritin, Iron, and saturation levels with a major increase in TIBC, DQ2/DQ1, 0609 Dx Graves Disease

I also believe doctors need to make sure all vitamin levels are at the mid to high range in sick patients not just Celiacs. Mega doses of Vitamin D3 has helped my neurological problems.

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Can it be related? Sure. Must it be? I don't think so.

I developed fibromyalgia long after going gluten free, due to other stressors in my life. If fibro is caused by a response to a chronic stress state in the body, and a person is an untreated celiac, it makes sense that one of the ways the stress on the body of untreated celiac would manifest could be fibromyalgia.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Thanks for the responses. My sister has a physical this week. I told her that she must ask for a celiac test! She mentioned celiac to her dr (neurologist or rhemotologist) who didn't think that fibro and celiac are related. I told her that many doctors don't know about celiac.

Thanks again!

Diane

Diane,

Hi, I have talked to many people who were dx with fibro first and later Celiac Disease. I was dx with fibromyalgia in 1995. In 2005 I was dx with Celiac Disease. All the severe symptoms of Fibromyalgia are gone. I do have a few tender spots but not nearly as tender. I do believe fibromyalgia is related to the gut. I also had a neighbor who was dx with fibro and went gluten free without a Celiac dx and he also has experienced the same great results.

Why a doctor would not test for Celiac Disease when it is in the family and instead settle for a Fibromyalgia dx is beyond me???? I would highly recommend your sister get tested before she does a trial of gluten-free. If I had discovered my Celiac 10 years earlier I would have avoided 10 years of pain and fatigue not to mention the neurological complications that developed because of a late diagnosis. Being on the diet is really quite simple...you just eat the way we are supposed to eat...all natural.

I really wish someone would have known about Celiac Disease in 1995! Good luck and I hope your sister listens to her very smart sibling.

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Hi Diane

I was dx'd with fibro and none of the meds helped. A few months later I got a newsletter from the Fibromyalgia network where they were discussing that 75% of fibro sufferers have gluten problems and other food intollerances. I started researching more and that's when it clicked in my head. Went gluten free and I would say that a lot of my fibro pain has eased up. Not 100% mind you but no where near as debilitating as they once were.


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

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Diane, Tarnalberry, Txplowgirl,

My neuro also never heard that Celiac Disease could cause neurological symptoms and also can be related to strokes according to Dr. Green. I was at a Celiac conference a few years ago and asked this question already knowing that Dr. Green was researching this. The neuro speaking said he did not know of any connection. Luckily Dr. Green was also a speaker and discussed the connection.

Why don't doctors keep up with this information. Our conference was a good example. It was held in a medical college. All doctors and students were invited. No one came from the college. Many nurses came. Many patients came. Doctors say they don't have time. Unless they have a patient like me with the time and interest to educated them, they continue to be in the dark.

What other symptoms does your sister have? Your sister could go on the Pubmed site and search her symptom and celiac disease and maybe come up with a few articles that would show her doctor that there is a connection.

I would also recommend her to request tests that might show malabsorption such as tests for B vitamins especially B12, MMA, Homocysteine and folic acid, also K and D3 along with zinc and selenium and ferritin, iron, saturation and TIBC. This are just some I have had done and have helped guide me in what vitamin supplements I needed.

Vitamin D3 as I mentioned in my signature is what really helped me recover from the many symptoms I had. A Cleveland Clinic doctor recommended 8,000 IU of vitamin D3 daily and that is what started my road to recovery. The Gluten free diet relieved so much inflammation in my body but having had this disease so long before being diagnose, I needed help and vitamin D3 is what finally made a big difference in my recovery.

I hope everyone with Fibro requests their D3 to be checked and make sure you get the results as you want your numbers in the very high normal levels for best results. I think they are recommending around 60+ng/mL. They say now that having good levels can help prevent colds, flu and cancers. I know that since I started taking mega doses, I have not been sick and I have low WBC and used to be sick all the time!


C.D.

Mom-Gold Star Celiac dx June 2005 with many neurological complications DQ2/DQ1, 0603, dx with DH Oct 2005

Dad-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2/DQ1, 0609

Son-Celiac Disease-positive AGA IgA and IgG, positive tTG IgA DQ2

Daughter1-Celiac Disease positive tTG IgA DQ2

Daughter2-Celiac Disease-Mild Gluten Challenge caused severe anemia and major drop in Ferritin, Iron, and saturation levels with a major increase in TIBC, DQ2/DQ1, 0609 Dx Graves Disease

I also believe doctors need to make sure all vitamin levels are at the mid to high range in sick patients not just Celiacs. Mega doses of Vitamin D3 has helped my neurological problems.

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Thanks for the info. My sister has anxiety issues, and has trouble sleeping. She also has hand and foot tingling. I will pass the info on to her! She goes to the dr on Thurs. It is amazing to me that drs know so little about celiac!!

Diane

Diane, Tarnalberry, Txplowgirl,

My neuro also never heard that Celiac Disease could cause neurological symptoms and also can be related to strokes according to Dr. Green. I was at a Celiac conference a few years ago and asked this question already knowing that Dr. Green was researching this. The neuro speaking said he did not know of any connection. Luckily Dr. Green was also a speaker and discussed the connection.

Why don't doctors keep up with this information. Our conference was a good example. It was held in a medical college. All doctors and students were invited. No one came from the college. Many nurses came. Many patients came. Doctors say they don't have time. Unless they have a patient like me with the time and interest to educated them, they continue to be in the dark.

What other symptoms does your sister have? Your sister could go on the Pubmed site and search her symptom and celiac disease and maybe come up with a few articles that would show her doctor that there is a connection.

I would also recommend her to request tests that might show malabsorption such as tests for B vitamins especially B12, MMA, Homocysteine and folic acid, also K and D3 along with zinc and selenium and ferritin, iron, saturation and TIBC. This are just some I have had done and have helped guide me in what vitamin supplements I needed.

Vitamin D3 as I mentioned in my signature is what really helped me recover from the many symptoms I had. A Cleveland Clinic doctor recommended 8,000 IU of vitamin D3 daily and that is what started my road to recovery. The Gluten free diet relieved so much inflammation in my body but having had this disease so long before being diagnose, I needed help and vitamin D3 is what finally made a big difference in my recovery.

I hope everyone with Fibro requests their D3 to be checked and make sure you get the results as you want your numbers in the very high normal levels for best results. I think they are recommending around 60+ng/mL. They say now that having good levels can help prevent colds, flu and cancers. I know that since I started taking mega doses, I have not been sick and I have low WBC and used to be sick all the time!

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